Wednesday, 6 August 2014

Discalaimer: I am not a medical professional. I am an avid researcher with a passion to know as much as I can about my illness. Scroll to the bottom for a list of articles on living with FMS.﻿

What is FMS?

Fibromyalgia is a syndrome characterized by a number of symptoms including wide-spread pain that seems to be originating in fibrous tissues, morning stiffness, delayed mental functioning, digestive problems, IBS and fatigue (to name a few).
Fibromyalgia is a lot of things, but more than anything else it is a poorly understood medical condition. If you or a loved one has been recently diagnosed with Fibromyalgia understanding what that diagnosis means can go a long way towards being able to accept your new life.
Even today a diagnosis of Fibromyalgia Syndrome (or FMS) is considered by some people to be a controversial one. Even in the medical field it has been a very poorly understood condition until very recently. Some of your symptoms, or the symptoms that you hear about may seem nebulous but finally researchers are on the way to making it all make sense.
Current research suggests that FMS is a neurological disease. In very simple terms it is a condition wherein the parts of a sufferer’s brain that deal with pain and sleep don’t work properly (this is a good go-to phrase when explaining your condition to other people). However it is a great deal more complicated than that, and while we still don’t know exactly what the mechanisms behind the condition are we can explain it a great deal better than we once could.

The mechanisms at work

Sleep-
There are five stages of sleep that a healthy brain passes through every night. Rapid Eye Movement (or REM) when you dream. Then stages numbered 1-4 or alpha, beta, cappa and delta.
When stage 4 sleep occurs there are delta brain waves being produced that can be registered on brain scans. These waves are the longest and mildest of the four brain waves.
Stage 4 sleep is also called restorative sleep. When you have a cold, or simply have a hard day, a healthy brain uses stage 4 sleep to kick into high gear and repair tissues and cells that have been damaged throughout the course of the day.
When you have FMS however, your brain sporadically produces short alpha brain waves that interrupt the delta ones. When your brain is trying hard to repair your tissues it is being constantly interrupted, resulting in waking up feeling stiff, sore and groggy as though you hadn’t slept at all.Pain-
Pain has long been considered one of the main symptoms of FMS. When you have FMS your pain is rarely (if ever) low enough that it can be ignored and is often incapacitating. It is the sort of pain that, when ignored, will increase until you can no longer function.
Though there are still multiple theories about the cause of this pain in the medical community a few of the most commonly accepted ones are:a) In a healthy person the brain stem has a sort of built in filter that uses chemicals such as serotonin to block out some of the painful sensations that humans experience. However, in fibro-mites (people with FMS) this serotonin filter is missing. We feel the full effect of pain.
For example, if we measured pain on a scale of one to ten and say getting pinched is a 4 then the serotonin filter filters out the pain so that a regular person may experience it as a 2. For someone with FMS that pain is still a 4.
For this reason people with FMS also experience discomfort from sensations such as the feel of clothing or bedding, touch (hugs, handshakes etc.) light and sound.
One suggested, and well received, reason why we may lack serotonin is stress. Some researchers believe that FMS is caused when people with a genetic predisposition get stuck (NOT OF THEIR OWN ACCORD) into a cycle of chemical stress.
When someone is stressed out there body creates adrenaline, in order to deal with said stressful issue (such as being chased by a sabre-toothed cat) and stay alive. When extra adrenaline is produced, the production of extra serotonin follows. So that if you hurt yourself (say, by getting bitten by said sabre-toothed cat) you don’t have to immediately deal with the injury and you can run away. However, being in a constant state of chemical stress uses up serotonin levels and therefore there is none left to filter out the pain we feel.
I must restate that the above is a theory. I also must stress that the stress cycle is involuntary and uncontrollable. A sufferer cannot simply will the pain away, ignoring it (as I stated above) simply makes it worse.b) There are others who believe that FMS is caused almost completely by the above-mentioned sleep disturbance. Though the two theories are clearly not mutually exclusive. It is very possible (I might even say likely) that FM is caused by a combination of factors.
So, that covers sleep disturbance and pain.

What of the other symptoms?

Fibromyalgia comes complete with a dizzying list of seemingly nebulous symptoms. It is, in fact, this list of symptoms that leads so many misinformed people to be sceptical about the existence of the disease.Symptoms:

Anxiety, depression, mood swings

Bloating, constipation and/or diarrhea, abdominal pain, nausea

Chemical sensitivities including medications

Cold hands and feet

Dizziness

Dry mouth and/or eyes

Fatigue and/or lethargy

Headaches

Heart palpitations

Memory lapse, difficulty concentrating, transposing numbers and words

Numbness and tingling in hands, arms, feet, legs and/or face

Sensitivity to light, sound, odours, and/or temperature

Sleep disturbances

Vision changes

It’s true, when reading the list of symptoms above we do sound like a bunch of hypochondriacs. However, when you compare the list of symptoms with the research described above things start to make a little more sense.
After my diagnosis but before my own researching rampage I had deduced that all of my symptoms seemed to indicate a great deal of stress. However I didn’t feel stressed.
Then I started to read. When our bodies are stuck in a chemical stress cycle we begin to feel the effects of stress. And it seems that it is that stress that can cause the extensive list of symptoms above.
Fortunately it all makes sense. Poor sleep, cycle of stress chemicals, symptoms of acute stress. The only question left to answer is the cause.

What causes FMS?

Unfortunately the answers to this question don’t have such clear research to back them up, but that doesn’t mean there aren’t theories. The most prevalent theory is that there is some genetic disposition that may increase ones chances of developing FMS. FMS and CFS (Chronic Fatigue Syndrome) seem to run in families.
Most sufferers can also pin-point the cause of their FMS. That doesn’t mean it was black and white, one day they felt great and the next day they felt awful. It’s more like the straw that broke the camel’s back.
I’ll give you my own experience for an example:
As a result of childhood injuries I’ve suffered from chronic pain all my life. Not, however, from widespread chronic pain. I had pain in my back and shoulders and I knew when and why it started.
Working long hours on my feet on a concrete floor seemed to exacerbate the problem, but I wasn’t about to quit my job. Then one day, on the back of my husband’s motorcycle we hit an uneven patch of road. I gripped tighter to the bike, my head bent slightly backward with the weight of my helmet and at the next bump. Pop! Something cracked in my neck. All I knew at the time was that it hurt a lot.
Over the next few weeks no amount of over the counter medication could help my spreading pain and no X-ray or MRI would show the cause. I was already an insomniac but now even when I did sleep I felt terrible. After a year of searching I was properly diagnosed and treated.
This, by the way, is a considerable success, there are many people who visit doctors of every specialty for 5, 10, 15 even 30 years before getting a proper diagnosis.
FMS sufferers often (I want to say always but to be safe, I’ll say often) find they can pin-point the last straw that caused there FMS. It is always a stressor whether physical, mental or emotional. It may be a divorce, a labour, a lost job, the birth of a new sibling, a particularly stressful year at university etc. Unfortunately there is, as of yet, no way to tell who will develop FMS before hand.

The bad news:

Though there are a number of effective treatments, and more being discovered every decade there is no cure for FMS. And the fact is there isn’t one on the horizon. This is a common trait amongst neurological diseases. There are people who experience recovery, but they are few and far between. If you have been diagnosed the odds are you will have FMS for the rest of your life.

The good news:

FMS is very common, it is estimated that 2-4% of people have FMS (with women 5-10 times more likely to develop it) and most of those people live fulfilling lives. Life with FMS is very hard, there is no doubt about it, but it can still be fulfilling.
Also, like I said above, though FMS is still considered a controversial diagnosis awareness is spreading rapidly. Which means fewer and fewer people will look at you like you’re crazy and more and more people will be conducting research to find more effective treatments.
Plus, there are many effective treatments already. From pills, to alternative and complementary medicines to lifestyle changes there are many ways to make your life easier to live.

If you have FMS

FMS is not a condition that should be handled alone. It is life-changing and coping with those changes will be much easier when you have the support of a caring medical provider. If you need to visit a hundred doctors until you find someone who believes you and who is eager and willing to help you get your life back, it‘s worthwhile.
Read as much as you can. With or without a healthcare provider your health is your responsibility. You are the head of the team when it comes to taking care of your illness and there are many things that you can do at home that will help you to get some relief.
However, read with caution. It is certain that as your reading and learning about your condition you are going to come across a lot of opinionated pieces where people will go so far as to suggest that you don’t have a condition at all. They may say you’re lazy, whiny or a hypochondriac. You may even have people in your life that say that. FMS is a REAL CONDITION. Do your best to ignore slanderous materials.
Know that your life will get better and better. Most treatments allow you to become more mobile and independent over time. Most people with FMS find that the first year or two are the worst. Once you learn how to live with your condition you may be able to stop fighting so hard against it.

If you think you have FMS

Please do not use this article or any other that you find online to diagnose yourself. FMS is a complicated condition and there are many others that mimic it’s symptoms, from diabetes to Lyme Disease. If you are experiencing some of the symptoms described above you need to find a medical provider that will get you properly diagnosed and treated. The internet is not your doctor.

Welcome to the reincarnation of what was once my sewing blog Mikelina Makes. It was impossible for me to keep my blog going consistently with my health so I left on a very long hiatus about a year ago. In that time I have moved many times, gotten better control over my health, had my second beautiful baby boy Wildeman's little brother [bog-named] Roo. Roo is almost four months old now and I missed my sewing machine so badly but more than anything I missed my blog. Funnily I've been taking picture to post the whole time I've been gone so I'm so excited to get going and post some sewing projects, refashions and ootds:

So, to answer a few questions:

What is a spoonie?

A spoonie is a person living with a chronic illness. 96% of chronic illness are invisible to the naked eye. I am the 96%. I live with fibromyalgia, depression, PTSD (post-traumatic stress disorder) and am recovering from EDNOS (eating disorder not otherwise specified). All of these things have major impacts on my life and I don't try to hide or downplay them. I ask people to accept them as a part of me without pity. They are just one of many parts of my life. Many of my posts and YouTube videos will be about chronic illness, chronic pain etc but I will also continue to sew and refashion and I hope to share all of that with you!

Who is Mikelina? (of Mikelina Makes)

Well, I am, sort of... Mikelina is a nickname that my mother used to call me. When I first started this blog I was not entirely comfortable using my real name, however, the more time I spend online, at my blog, on Facebook etc the more I want to be my whole self here just as much as I am in the "real world". So, my name is Mikal (pronounced Michael) I really like the sound of Mikelina though so I'll keep it for now and go by Mikal Mikelina. That has a nice ring to it doesn't it?

Words

I believe that words have power and so there are a couple that I will be using here that many people avoid. I am using them in their original sense as simple adjectives. For me they don't have positive or negative connotations. I will use the word "fat" a lot because I am and I don't think there is anything wrong with that. I will also be using words like "chubby" and "big". I will not be using words like "overweight" or "rubenesque" that negate the beauty of fat women or idiomatically try to hide our existence from the world.

The Low Pain Diet

The Low Pain Diet started out for me as an experiment in natural pain management for fibromyalgia. I had cut out sugar and caffeine years ago (Ive had FMS for 6 years now) but I decided to cut out a few more things to see if I was able to get better control of my pain. The main focus has been anti-inflammatories but I also avoid stimulants. I have cut out grain, animal products, sugar, syrups, starches and processed food. I eat fruits, vegetables, oils (coconut and olive) nuts and seeds. My aim was to make my body work as little as possible so that assimilating and dealing with the effects of chronic pain were all it had to do.

I need make a vitally important clarification:

I am not suggesting that this diet will cure anything. I don't advise others to take it up and I don't know whether or not it will help you if you do. I only that it has made a considerable difference for me personally. I still take a number of medications, exercise, rest regularly and still experience chronic pain.

My average pain level on a daily basis went from 9ish when I was first diagnosed, to around 7 on a tricyclic anti-depressant, then down to 4 on an anti-convulsant now it averages around 2-3 but if I push myself it gets back up pretty fast. I haven't, however, had a flare up in months.

This diet has had such a profound effect on my life and my ability to manage my disease that I wanted the opportunity to share it with others and see if it works for them. It also a diet that is incredibly daunting to take up and I want to share tips and tricks that I have learned that make that a less Herculean task. I will be updating you on the diet if/when it changes, on recipes and on my pain and medications. Hopefully this will be beneficial to at least a few of you.

Topics

My goal is to post every day even if I'm only posting a smoothie from the Low Pain Diet. If you only want to see the kinds of things I would have posted before as Mikelina Makes I will be posting sewing, fashion and beauty stuff on Tuesdays and Fridays so come back then!

Also be aware that my children are beyond adorable and you will see them a lot. I mean look how cute:

Thanks guys for reading all the way to the bottom of the post! I love it when that happens!